Published October 5, 2022

I have worked in public health for over two decades now, and I have learned the answers to healthcare challenges are complex. A multitude of social factors come into play when health disparities come up: finances, culture, race, sexuality, religion, access to screening and treatment, food, and education. All of these societal factors all play a role in patient care.

A Silver Lining

In 2020, COVID-19 devastated our world. While that was happening, a history of racial bias in the healthcare system was unearthed. The silver lining was a renewed awareness and attention focused on the ongoing bias, microaggressions, and struggles some patients face. Together, we all faced the same global pandemic.

Personal Experience

And as the world faced tragedy after tragedy, my own health was impacted by cancer. (Seriously!) My breast cancer diagnosis during COVID-19 gave me a front row seat to navigating cancer care–already a terrible circumstance–during the worst of circumstances.

“As an Asian American, I experienced bias during my diagnosis and treatment, as some of my questions and concerns were not taken seriously or dismissed completely. But, with decades of advocacy under my belt, I trusted my instincts and rebuilt a team whom I trusted would listen.” – said Anjee Davis, Fight CRC CEO

My story is one of thousands that Black and brown individuals could tell. People in the LGBTQ+ community can also relate to my story. Anyone who has experienced bias when seeking health care knows the frustration of not being heard, and in a worst-case scenario: What it feels like to slip through the cracks.

The Hijack

Weaving health equity (“health disparities”) and inclusivity efforts into the fabric of our mission is imperative. At Fight CRC, health equity and inclusivity efforts are intertwined across all our programs. We are passionate and committed to health equity because everyone from cities to rural areas deserves the same compassion and care. We consistently strive to improve and amplify our message and reach. We relentlessly fight for ALL patients to have access to care.

In 2020, the awareness for health equity became a genuine wake-up call for many. Some organizations looked inward and assessed if they were reaching communities in need.

But other organizations hijacked health equity by benefiting from increased funding without actually using these funds to build programs to positively affect and impact the communities it was meant for.

Relationship Building

For me personally, a critical part of health equity is relationship building. Rather than jumping into communities uninvited, there has to be authenticity in how we do the work. When the ingredients of authenticity and commitment are added, we can do our best work by developing innovative strategies to solve the challenges facing health equity and inclusion. It’s not fast or easy. It’s important not to hijack the process with quick fixes without including the individuals we hope to benefit.

As part of our introspection of 2020, Fight CRC took a step back to assess if we were representing patients of every creed and color. Since colorectal cancer hits racial and ethnic groups hard, we wanted to ensure that all patients were represented when sharing their stories. Some races and ethnic groups see higher incidences and higher mortality rates. We sought out ways to effectively reach these patients.

I am incredibly proud of our team for being intentional and working to improve our health equity efforts at every opportunity possible. Our response to a complicated issue remains consistent: We empower patients; we amplify their stories; and we fight for policy change.

From our research and care teams, and our policymakers, we demand rigor and transparency. We are fighting for equity and access, establishing authentic relationships within the communities we serve. My feet are planted in the ground, enriched by my own personal experiences.

Fight CRC is here for the thousands of patients like me who share lived experiences of inequity in health care and are committed to see a better future.

We strive to do better because we must do better.

Published September 22, 2022

Voting is the very foundation of advocacy. It is your first chance to engage with the policymakers that represent you at the federal, state and local level. Our elected officials make decisions on everything from access to health care to how much money goes toward medical research.

It’s up to each of us to make sure our voices are heard! It’s up to you to Flex Your Vote!

1. Voting Is Important!

The simple definition of democracy is government by the people. It is our elected official’s job to represent us. We must get out and vote and make our voice heard. Voting is my opportunity to use my voice to vote the way I want for candidates who I feel best represent me, my values, and views.

President Franklin Delano Roosevelt said, “Nobody will ever deprive the American people of the right to vote except the American people themselves, and the only way they could do this is by not voting.”

2. Express Your Opinion and Values Through Voting.

There are certain healthcare policies, research, and funding policies specific to colorectal cancer. Fight CRC keeps a pulse on policies and issues so you can know when it’s time to act and tell your elected officials how their actions could affect you as a colorectal cancer advocate.

During elections it’s important to know where candidates stand on important healthcare issues that could potentially affect you as a cancer survivor. Things to think about are pre-existing conditions, access to clinical trials, the cost of prescription drugs – the list goes on.

All of these things matter and either have been parts of bills in the past or easily could be in the future. You should want candidates in office who will protect you and keep your best interest in mind.

3. Voting for One Candidate Is Better Than Not Voting.

There is never going to be one candidate that you completely agree with 100%, so research a candidate and find one that represents your values and views as closely as you can. People often feel that their vote doesn’t matter, but there are many local and state elections that have been decided by just a few votes, so every vote counts! It’s YOUR vote, why wouldn’t you cast it?

4. There Is More Than One Way to Flex Your Vote.

You can vote by mail. You can have your ballot at home and be able to take more time to look up a certain measure or compare and contrast candidates to ensure you are making the best choice that represents you. Or, you can vote in person at the polls. It doesn’t matter how you prefer to vote: in person or by mail. The important thing is to vote!

“I typically visit my state’s information page on voting to see a sample ballot. This lets me know what my ballot will look like on voting day, so I know exactly what seats are open and who’s running. It will also let me know if there are any special measures to vote on. From there I can research candidates and issues, so I am as informed as I can be for voting day. In my state, North Dakota, you do not need to register to vote, so there really isn’t much prep work aside from knowing where I am going to vote, making sure I have the proper ID, and knowing what is on the ballot.”

–Amanda Houston, stage II survivor

“I started Fight CRC because I believed in grassroots activism. I wanted to engage the systems that touch us as patients and caregivers – research, access to care, public policy – and push them to consider our needs and values. I wanted to be heard! And over 15 years later, we are. We sit at tables where decisions are being made and are part of developing the policies and programs that impact us. We aren’t here to pick one party or the other. We remain non-partisan. Our focus is on fighting colorectal cancer and voting is a key part of that fight.”

Nancy Roach, Founder of Fight CRC, Your Content Goes Here

5. It’s Your Civic Duty!

Many advocates say the best part of voting is the sense of pride you feel about completing your civic duty. There are a variety of ways to find out more information about candidates including calling the campaign office: Candidates want your vote, so they should be happy to answer any questions you may have about them or where they stand on issues.

Published September 7, 2022

Back to school season is a time of new beginnings for many families. School supplies shopping, starting new routines, and restarting fall sports often consumes to-do lists and schedules. But for families facing cancer, back to school may look a little unique. We’re here to guide you through.

For Parents of Younger Children

If back to school is colliding with a cancer diagnosis, your world is doubly stressful. If you’re entering a new school year and cancer a part of your family’s life, you can take a few extra steps to set your kids up for success:

  • Notify their teachers and share the best way to communicate with you.
  • Create a routine (as best as you can) for mornings, after school, and night.
  • Confirm your children’s emergency contacts and notify the school who may be coming around to help with them.
  • Line up babysitters and/or nannies who can help provide consistent support and stability for your child.
  • If your children need extra help through tutoring, look for those resources now or ask the school what support they can provide.
  • As soon as you get a school calendar, post upcoming events and make it a priority to be involved as much as possible.

For Parents of Tweens/Teens

Like younger children, teens may or may not display behaviors that indicate cancer is affecting them. But, if cancer is affecting your world, it’s impacting them too. Your teen will probably be focused on school and their social life, but there are still ways to connect with them and support them. And, many of the tips and steps to take with younger children apply to tweens and teens too.

Learn

For insight into what it’s like to be a teen facing colorectal cancer, either personally or because a parent was diagnosed, check out Fight CRC’s Teen Colorectal Cancer Roundtable. The National Cancer Institute also offers a free booklet, “When Your Parent has Cancer; A Guide for Teens.”

engage

While it’s good (and normal!) for teens to be consumed with their friends, the experience of a loved one facing cancer can also be life-changing. Situations like these often build empathy in our teens. Even if they act like they don’t want to be involved, powerful connections can form when you invite them in.

Invite your teen into your cancer journey as much as you’re comfortable. This can look like:

  • Take them to events and appointments.
  • Buy them an awareness t-shirt and bracelets to pass out to their friends.
  • Show them how to fundraise for the cause.
  • Encourage them to share their story on social media or at school clubs, and explain how it’s great for raising awareness.
  • Get involved in advocacy with them, bring them to Call-on Congress

Support

Don’t forget to line up extra support for your tween/teen as your family faces cancer:

  • Identify potential tutors or others who can help with coursework.
  • Sports tryouts and sign-ups can sneak up. Begin asking when and where they happen. And don’t forget about school sports physical deadlines. Find out when they need to be submitted.
  • Let the middle school or high school counselor know about your illness so they can be on standby to offer support as needed.
  • Get your teen involved in Fight CRC’s Junior Advocates program.

For Teachers–Supporting Your Students with a Parent with Cancer

If you’re a teacher with a student who is facing a parent with cancer at home, it’s important to remember that they’re going through trauma. Being a trauma-informed teacher is one of the biggest gifts you can give these students.

Common Behaviors

If you know your students are living with a parent with cancer at home, they may show some behaviors that are a trauma response. If you see a pattern of these, connect with the parent(s) or guardians, and/or ask the guidance counselor to help the student cope:

  • Silent or withdrawn, struggles to make eye contact.
  • Quick to anger, which can be vocalized or displayed by sometimes aggressive behavior.
  • Quick to cry or show sadness.
  • Very clingy and attached toward you or other teachers.
  • Poor eating habits, especially eating very little.
  • Sleepy and tired–they may be struggling to sleep at night and/or want to nap in class.
  • Lack of focus and concentration.
  • Depressed or down.
  • Teens and tweens may show signs of eating disorders, self-harm, or act out sexually.
Get more information about Child Trauma.

How to Help Families Facing Cancer

You’re in education because you want to help your students. We polled our community, and here’s what our parents told us they want their kids’ teachers to know:

  • Treat the students like they are no different than the others.
  • Have open communication with the parents, check-in regularly.
  • Give students an outlet to express themselves.
  • Line up support that checks in, and keep tabs on their emotional wellbeing.
  • Be a bit more understanding if homework isn’t done.
The old adage that it “takes a village” to raise kids is especially true when it comes to parenting your kids when you have cancer. But you don’t have to do this alone. To chat with a fellow parent or find more resources to help guide you through this, join Community of Champions.

“I think it’s important to communicate with your children’s teachers. Children don’t always know how to express themselves, and when they see you sick, hospitalized, or struggling–they may act out or struggle at school. Having open communication with educators and school is so important. And giving them an outlet to express themselves or support to check in is so important.” – Julie Brown

“As both a parent with cancer (10-years cancer free) and as a student (15 when my dad died) with a cancer parent, best advice is to treat them like they are no different than the other students! I got away with everything because the pity level was so extreme, and my son was given the easy path in school, while I was going through treatment. I had to remind his teachers that they were needed more than usual, and just give him as much normalcy as possible.” – Tammy Fulton Myrick

Published September 5, 2022

Fight Colorectal Cancer (Fight CRC) research advocates advised on new evidence-based guidelines addressing biomarker testing based less on the cancer type or tumor origin and more on the methodology and status of a biomarker. The guideline titled “Mismatch Repair (MMR) and Microsatellite Instability (MSI) Testing for Immune Checkpoint Inhibitor Therapy” was published by the College of American Pathologists (CAP) in collaboration with the Association for Molecular Pathology, the American Society of Clinical Oncology (ASCO) and Fight CRC. According to CAP, the guideline “breaks new ground with recommendations on the role of tumor mutational burden in MMR testing and the evaluation for Lynch Syndrome, a hereditary cancer syndrome that may be unexpectedly detected in the work-up of these patients with advanced cancers.”

Cancer biomarkers are biological, chemical, or biophysical entities that are present in tumor tissues or body fluids, and they can give valuable information about the characteristics of a tumor. Understanding the information about the tumor’s future behavior can help patients and their doctors decide the best treatment plan.

Two strategies outlined in Fight CRC’s Path to a Cure report are to develop provider and patient education campaigns and strengthen alignment with quality and accreditation measures through National Comprehensive Cancer Network (NCCN) and Commission on Cancer. Through the CAP’s new biomarker testing guidelines the colorectal cancer community is brought closer to the accreditation measures outlined in the Path to a Cure.

“This is real progress for patients,” said Anjee Davis, Fight CRC President. “One of our main objectives within our Path to a Cure report is to increase biomarker and molecular testing. The new CAP guideline brings us one step closer on our Path to a Cure.”


According to CAP, “The “Mismatch Repair (MMR) and Microsatellite Instability (MSI) Testing for Immune Checkpoint Inhibitor Therapy” guideline provides clarity for pathologists and oncologists to improve the evaluation of patients with colorectal, endometrial, gastroesophageal, small bowel, and certain other cancers who may be eligible for immunotherapies known as immune checkpoint inhibitors.”

Fight CRC’s research advocates, Wendy Lewis and Wenora Johnson, advised on the guideline publication.

“As a 3x cancer survivor diagnosed with Lynch Syndrome, I’m very proud to have worked on the clinical guidelines for Mismatch Repair and Microsatellite Instability Testing for Immune Checkpoint Inhibitor Therapy,” said Johnson. “Knowing that I can change my long-term treatment outlook for any additional cancers associated with Lynch Syndrome, makes me look at cancer survivorship totally different. What this means for patients, is that we can possibly have a better quantity and quality of life due to these evidence-based guidelines.”

Fight CRC provides free, medically-reviewed resources to ensure patients receive more effective testing to be their best advocate. Earlier this year, Fight CRC board member Dr. Richard Goldberg and advocates submitted an op-ed about the importance of biomarker testing to The Cancer Letter, read the article.

Published September 5, 2022

The DEA is warning consumers about counterfeit drugs, including fake Adderall advertised on the Internet.

The fake pills are not made by Teva Pharmaceuticals or other legitimate pharmaceutical companies, contain none of the active Adderall ingredients, and instead have ingredients that may be dangerous, such as fentanyl or methamphetamine.

Adderall is a stimulant approved by the FDA to treat attention deficit disorder and narcolepsy but is occasionally prescribed off-label for cancer-related fatigue.

If something looks “off” about your medication or its packaging, you may be in possession of counterfeit drugs. Be on the lookout for misspellings on the packaging or differences in pill markings, shape, or color from what you are familiar with.

Resources for Keeping Yourself Safe from Counterfeit Drugs

If you are unsure about the authenticity of your medication, there are a variety of free tools available on the internet to help you verify that your medication is real and manufactured by FDA approved pharmaceutical companies.

The FDA provides information and resources on how to keep yourself safe from counterfeit drugs, and what to do if you suspect the drugs you have are fake. You can also contact the FDA’s Office of Criminal Investigations (OCI) at 800-551-3989 if you believe you have received counterfeit Adderall or other drugs.

Unpacking Laxatives

Patients who have purchased counterfeit Adderall should not take it and talk to their doctors about obtaining the right medicine. With so many drugs in short supply right now, the FDA warns patients to be particularly careful when buying medicine on the Internet.

The Bottom Line About Fake Adderall

Most patients think the prep was specifically chosen for them by their doctor. The actual truth is most patient’s preps are chosen by the scheduler from a list of OTC and prescription preps OK’d by the doctor. Schedulers are either medical assistants or nurses that are typically office-based. Unfortunately, because they are primarily in the office, they do not get much exposure to the actual colonoscopy experience. They also do not get to hear the patient’s colonoscopy prep stories, and if they had any significant difficulties. Because of these factors, schedulers may choose colon preps based on some misperceptions.

One of the most common misperceptions is the cost of the prep. Rightfully so, many schedulers tend to be very cost-conscious and frequently use that to choose preps. Schedulers are commonly informed by industry reps that a prescription prep is “covered” by insurance. This can be easily misunderstood to mean the prep has “no cost” to the patient. What this means is insurance pays a portion of the cost, but the patients typically have a copay, and it is almost impossible to know what that amount is until the patient is at the pharmacy. In a quality improvement project for our office, we asked 500 patients with insurance what was their copay, or out-of-pocket expense, for their prescription prep. We found that patient copays ranged widely from $0-$165, with an average copay of $72 for their prescription prep. So “covered” does not mean free.

Published September 4, 2022

Before a colonoscopy, it is critical to completely empty all stools from the colon, but some patients have experienced a rare, but dangerous issue with kidney problems after colonoscopy prep.

Colonoscopy Prep

In addition to a clear liquid diet, two approaches are used most often:
  • A polymer-based laxative with polyethylene glycol 3350 (PEG), which is a powder that is dissolved in two to four quarts of liquid. PEG preps include GoLytely®, Nulytely®, Halflytely®, and Miralax®.
  • A saline-based laxative with sodium phosphate (NaP) which is available as a liquid (Fleet Phospho-Soda®) or pill (Visicol® and OsmoPrep®).
Patient acceptance, side effects, and the ability to complete the prep vary, but most studies show little difference in how completely the colon is cleansed.prep tips

Warnings for Kidney Problems After Colonoscopy Prep

However, there has been a concern when some patients experienced a rare, but dangerous kidney problem after colonoscopy preparation with sodium phosphate. In March 2006, the FDA alerted doctors about kidney failure from acute phosphate nephropathy associated with the use of both liquid and pills containing sodium phosphate. This has worried both doctors and patients as they chose a colonoscopy prep. Since then, the FDA has asked the manufacturer of Visicol® and OsmoPrep®, Salix Pharmaceuticals, to add a boxed warning to these products.

However, in a study of patients having a colonoscopy in the Henry Ford Health System in Detroit, no difference in the risk of kidney problems with either PEG or sodium phosphate preps was found among patients who didn’t already have pre-existing kidney disease.

7,897 patients had a colonoscopy during the time reviewed, 6,833 of them using a sodium phosphate prep. In the year before their colonoscopy,1,617 patients had known renal problems. Another 3,928 had no testing in the 12 months before or 6 months after their procedure. Among the remaining 2,352 people for whom there was information about kidney functioning, 88 had a kidney problem after colonoscopy. These patients were about equally distributed between the PEG and the sodium phosphate groups.

Risk Factors for Kidney Problems Were:

  • Age over 65
  • African-American race
  • Low baseline glomerular filtration rate (GFR) which measures potential kidney failure
  • Hypertension
  • Use of certain medications including ACE inhibitors, angiotensin-renin blockers, and thiazide diuretics
Stefan Russman MD and his team concluded, in patients without preexisting renal disease, the risk of renal impairment after colonoscopy appears to be similar between sodium phosphate and PEG users.

However, they warned that Sodium Phosphate use in patients with preexisting renal disease is not recommended, but common in clinical practice. Sodium phosphate should not be used in patients with preexisting serious renal disease, adequate hydration should be assured in all patients, and renal function should be monitored before and after colonoscopy in those at risk of renal dysfunction.

SOURCE: Russman et al, American Journal of Gastroenterology, Early Online Articles, October 26, 2007.

What This Means For Patients

If you are scheduled for a colonoscopy, you need to discuss your medical history and the drugs you are taking with the doctor who will be performing the test. Tests for adequate kidney function before the colonoscopy are probably important.

If you don’t have kidney or heart problems and are younger than 65, there is probably no difference in safety between large volume PEG gastric lavage colonoscopy preps and lower-volume sodium phosphate liquids or pills. You can make a choice that meets your personal needs.

Adequate hydration — replacing liquid lost during the copious liquid bowel movements — is critical no matter what prep you use.

Published August 30, 2022

On September 2, Fight Colorectal Cancer (Fight CRC) President, Anjee Davis will speak on the patient perspective at the Delphi Recommendations on Early-Age Onset Colorectal Cancer (DIRECt) meeting in Milan, Italy, organized by Gastroenterology and Gastrointestinal Endoscopy Unit, Vita-Salute San Raffaele University, San Raffaele Scientific Institute in Milan, and Fondazione Internazionale Menarini. This meeting is focused on the path to improve diagnosis and clinical management for early-age onset colorectal cancer (EAO CRC).

“Experts project that in the United States by 2030, colorectal cancer will become the leading cause of cancer-related deaths for people ages 20–49, making early detection and treatment vital steps in improving outcomes for those with colorectal cancer,” said Fight CRC president Anjee Davis. “A big part of our Path to a Cure report is addressing EAO CRC, improving treatment and addressing quality of life. This is 100% a global issue. We are excited to be at an international meeting focused on accelerating research and improving outcomes for EAO CRC patients.”

The increase in colorectal cancer (CRC) in those ages 50 and under has created urgency for this multidisciplinary international group (DIRECt) to convene to develop evidence-based recommendations for the management of EAO CRC.

The DIRECt group produced 28 statements in seven areas of interest: diagnosis, screening, genetics, pathology-oncology, endoscopy, therapy and end-stage disease. These are the first evidence-based consensus recommendations on EAO CRC.

On June 30, 2022, Fight CRC and Dr. José Perea García of Madrid, Spain, co-hosted the inaugural Early-Age Onset Colorectal Cancer Symposium. More than 300 researchers, advocacy groups and physicians met to discuss the implications of rapidly rising rates of EAO CRC. The DIRECt group will continue conversations happening around this global issue.

Published August 26, 2022

When thinking about interventional clinical trials, most people visualize patients receiving infusions or taking pills of an experimental drug. In addition, more often, those patients that will undergo surgery as standard of care will not consider that a trial has anything to offer them in that scenario.

However, surgery is sometimes part of a clinical trial. For example, an experimental drug or vaccine may be given before surgery, to create better conditions for the resection. In other cases, the patient may receive immunotherapy after surgery, to prevent recurrence of the cancer. Also, some trials offer the chance of experimenting with novel resection techniques at the moment of undergoing that surgery that is indicated by the standard of care.

Surgery is often a window of opportunity for participating in certain clinical trials.

Highlights of the ERASur trial:

  • Who: Stage IV patients, MSS, BRAF wildtype, no liver-only metastases or mets to the peritoneum or omentum.
  • What: Comparing outcomes of patients with ablative therapies + systemic therapy to systemic therapy only
  • When: Active since 2023
  • Where: 100 locations nationwide, additional locations added monthly
  • Why: To improve overall survival for patients with limited metastatic disease

Resources

Clinical trials are critical to finding a cure for colorectal cancer. As an advocacy organization dedicated to supporting and empowering a community of patients, caregivers and families, Fight CRC has partnered with COLONTOWN to deliver a monthly blog series highlighting everything patients need to know about clinical trials and the best treatment options available.

More Fight CRC Resources

NEW-COMET

Ablation vs. Resection of Colorectal Cancer Liver Metastases (NEW-COMET)

NCT03844750

This trial for patients with colorectal cancer liver metastases will have 230 participants randomly assigned to resection or thermal ablation (microwave or radiofrequency ablation). As ablation becomes more frequently used to treat liver mets, this randomized trial looks at ablation versus resection and aims to get over selection bias as is seen commonly when ablation is used outside of a clinical trial setting.

The primary objective of this randomized, controlled, multicenter, double-blinded non-inferiority trial is to compare rates of local recurrence of cancer at 12 months. Secondary endpoints include overall survival, disease free survival, health-related quality of life, postoperative pain, complications, hospital stay, and cost-effectiveness.

The list of inclusion and exclusion criteria are given at the link above. Exclusion criteria include more than three lung mets and mets outside the lung and liver. Inclusion criteria include less than five tumors to be treated in one procedure and the size of the largest lesion not more than 30mm.

Pembrolizumab and Vactosertib on Liver Mets

Pembrolizumab After Chemotherapy in Treating Patients With Colorectal Cancer That Has Spread to the Liver and Who Are Undergoing Liver Surgery

NCT03844750

This single arm, open label, 19 participant Phase 2 trial, studies how well pembrolizumab and vactosertib work after standard of care chemotherapy in patients with colorectal cancer who have resectable liver mets. This trial uses pembrolizumab, an immunotherapy, and vactosertib, a drug that may stop the growth of tumor cells by blocking some of the enzymes needed for cell growth. These drugs given after standard of care chemotherapy, but before liver metastases surgery, may help shrink the cancer prior to surgery. These drugs, when given after liver mets surgery, may decrease the risk of cancer coming back.

The primary outcome measure is to look at the proportion of patients with twofold or more increase in the number of tumor-infiltrating immune cells (TIICs) in pre- and post-pembrolizumab treatment tumor specimens. Several secondary outcome measures including objective response rate, effect on surgery, etc. will also be assessed.

Eligible patients include those with metastatic measurable confirmed resectable microsatellite stable colorectal cancer liver mets. Participants may have mets in other locations as well, if other eligibility criteria are met.

What treatments are being compared in the ERASur study?

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Lorem Ipsum is simply dummy text of the printing and typesetting industry. Lorem Ipsum has been the industry’s standard dummy text ever since the 1500s, when an unknown printer took a galley of type and scrambled it to make a type specimen book. It has survived not only five centuries, but also the leap into electronic typesetting, remaining essentially unchanged.Lorem Ipsum passages, and more recently with desktop publishing software like Aldu PageMaker including versions of Lorem Ipsum.

What are the expected outcomes or endpoints being measured in the ERASur study?

Dr. Miller: The primary endpoint in the study is overall survival – comparing patients in the TAT group to those in the systemic therapy alone arm. We have additional secondary endpoints of event-free survival, toxicity of the treatments, and local control of metastatic disease in patients treated with TAT. Of note, we also have an optional blood collection in the study with planned future ctDNA analysis.

How does the trial address patient participation barriers?

Dr. Miller: Leaving as many decisions as possible to the treatment team and patient is one of the ways that we have made this trial pragmatic. We also permit patients to receive systemic therapy closer to their home and not necessarily at the site where they register for the trial which helps make participation in the trial much more feasible for patients who don’t live close to a site where the trial is open. I want to acknowledge the outstanding input from Manju and her colleagues from COLONTOWN for their input in making this truly a pragmatic trial.

To continue learning about the ERASur trial, check this X (Twitter) thread by @CrcTrialsChat, with short videos with the three Principal Investigators, and also this DocTalk of Manju with them, posted on Colontown University.  You can also view this clinical trial in Fight CRC’s Clinical Trial Finder.

Acknowledgements: The PIs of the ERASur trial: Dr. Eric Miller, GI radiation oncologist and member of the Translational Therapeutics Program at the Ohio State University Comprehensive Cancer Center –James; Dr. Paul Romesser, radiation oncologist and early drug development specialist, director of Colorectal and Anal Cancer, Department of Radiation Oncology, at the Memorial Sloan Kettering Cancer Center, New York; and Dr. Kate Hitchcock, Clinical Associate Professor, Department of Radiation Oncology, University of Florida Health Cancer Center.

Stay Tuned

Once a month, Maia Walker and Manju George spend time unpacking important research trials, tips, and advice for our community. Be sure to subscribe to sign up with Fight CRC and join COLONTOWN’s online community to continue receiving the most relevant updates in the CRC world!

You can also follow Maia (@sassycell) and Manju (@manjuggm) to stay updated on research and trials and visit ClinicalTrials.gov  for more information on trials.

Published August 23, 2022

Paula Chambers Raney didn’t wake up one morning thinking, “Today’s the day I will become an advocate.” Instead, advocacy came to her following a colorectal cancer diagnosis in January 2015. Seven years later, on July 25, 2022, she had the opportunity to go to the White House to speak as a survivor and advocate on behalf of the entire colorectal cancer community.

In February, President Biden relaunched the Cancer Moonshot and issued a call to action to prioritize progress on cancer screening and to ensure that all Americans benefit from advances in cancer prevention. Fight CRC convened a group of colorectal cancer patient advocacy and business leaders to answer that call in which all of the stakeholders chose to unite to support efforts that speak to their shared commitment to helping increase access to colorectal cancer screening for all Americans.

Fight CRC, which carries patients and survivors at the heart of all they do, extended the invitation to Paula who reflects – with much emotion, passion, and gratitude – about the opportunity to attend, and the importance of telling her story to the people who can make a difference in the care, treatment, and outcomes for people with colorectal cancer: Those sitting at the White House table with her.

Facing a Colorectal Cancer Diagnosis

Back in 2015, when Paula was newly diagnosed with colorectal cancer, she thought her story was unique. But as she has shared her story through the years, she has come to find out that her story, unfortunately, is the story of far too many people.

For more than a year before her diagnosis, Paula experienced signs and symptoms, and she spent too much time and money at doctor’s and specialist’s offices, and urgent care trying to get to the root of what was causing her – sometimes discomfort, but frequently – unmanageable pain. When she finally landed in the ER for the second time in a week, one of the doctors suggested a scan, which until then hadn’t been done. The scan revealed a large mass in her colon.

Now facing a colorectal cancer diagnosis, Paula was in a dark space: She didn’t have health insurance, and she was afraid she was going to die.

The hospital helped her sign up for insurance through the Affordable Care Act (ACA) after she received emergency care and her surgery. Ironically, if her cancer was stage IV, Texas automatically would have granted disability and healthcare coverage. Because she was diagnosed at stage III initially, she knew she was ineligible for financial assistance. The hospital told her there was nothing they could offer to help her. They directed her to apply for emergency services, which fresh out of surgery, she was unable to do. In 2015, same-sex marriages were not recognized in Texas, so her wife, Lara, was unable to apply for financial assistance in her place as she healed from surgery. Together, they were frustrated that their 30 years together meant nothing legally, and as a result, they were unable to get financial assistance.

“We didn’t know what we needed until one of us couldn’t work. One of the hardest things about going through this was having to ask for help.”

Paula and Lara were legally married in Texas in summer 2015, when the Supreme Court ruled in favor of same-sex marriage. At that point, she was able to get covered through her wife’s insurance.

“We have a $7,500 deductible, which I meet almost every year. It’s hard to catch up financially, but we are grateful for the life we have. We know it could have gone a different way,” she said.

From Houston to the White House

On July 25, 2022, Paula’s colorectal cancer story came full circle. In 2016 when then-Vice President Joe Biden and Dr. Jill Biden introduced the Cancer Moonshot, Paula and her wife Lara were invited to a luncheon in Houston to be part of a launch event. She could never have imagined that just a few years later, she would be invited to a seat in the White House as part of the reignited Cancer Moonshot.

In her own words, Paula recounts her journey from patient to advocate, and why she feels so passionately about making sure what happened to her doesn’t happen to other people.

5 Things That Paved Paula Chambers Raney’s Way to the White House

Looking back, Paula can identify five steps that led to her advocating at the White House. Here’s what she said, her her own words:

1. Getting Connected to Fight Colorectal Cancer

My introduction to Fight CRC came after my surgery in January 2015, when I attended a conference. Healing from surgery, walking with a cane, and feeling traumatized by all I had been through, I met a beautiful strong woman, who introduced herself as Candace Henley.

After meeting Candace and hearing her story, I was so inspired by her. She works with many organizations. She started her own organization called the Blue Hat Foundation. She inspired me to get involved in Houston.

Paula Chambers Raney and Candace Henley: September 2021, six years later I met people online and talking about my experience was very helpful. I met other colorectal cancer survivors who looked like me; who were my age; and who had the same issue: Nobody believed them. Nobody listened to them. They were misdiagnosed. They were told they were too young for colorectal cancer. I met one person after another with this same story. When I found myself in this community, I knew that I wanted to do more.

We were all fired up about what had happened to us. And we saw people were dying. I knew I had to do more.

Candace told me about Fight CRC, and I intended to go to Call-on Congress the following year. Then I was invited to serve as a Fight CRC Ambassador. I looked up Fight CRC’s website, and I was like, ‘Yes!’ What Fight CRC does is exactly what I am interested in.’

When I saw that Fight CRC went to Washington, D.C., I realized the opportunity to speak with senators and members of Congress, and I could share my story about what happened to me when I was diagnosed with colorectal cancer so young. I could also speak about how much the ACA meant to me: The need for coverage for people like me in a country that has so much. No one should fall through the cracks.

2. Taking Advocacy to a Whole New Level

Fight CRC works with the top doctors. They talk to the people in charge. They talk to the people that hold the purse strings, and Fight CRC is nonpartisan. Fight CRC gave me training in 2018. When Fight CRC gave me training, it took my advocacy to a whole new level.

Fight CRC has taught me so much – not just about my advocacy – but about the way that I interact with people on a daily basis. There has to be a point where we come together and talk. There has to be a point where we can sit down at a table and hash things out.

3. Getting a Seat at the Table

Nothing has made an impact on me like being in that room on Monday, July 25, 2022, in Washington, D.C. There are songs about having a seat at the table. And I had one. But it wasn’t for me. That day was not about me: It was for everyone who is with us now and who has passed within the colorectal cancer community.

Somebody asked me if I was nervous that day, and I said I was nervous every single day up until that day. I didn’t even sleep the night before. I brought notes to the table. But when it was my turn to speak, I said a prayer, and I said, ‘Speak through me, all my friends I have lost, all those people who have lost their mom, or their brothers or their sisters. What do you want these people at the table to know? Because right now I’m going to say it for you.’

And that’s what I did. I was not nervous, and I got these wings with the help of Fight CRC. They really have prepared me for this, and I’m forever grateful.

4. Sharing My Story

Things happened very fast. I was working on hosting the Houston Climb for a Cure, and I received a call asking me to join Fight CRC at the White House, and I said, ‘Yes! This sounds like an amazing opportunity!’ And then I said, ‘Let me talk to Lara.’ Lara said, ‘Do you know what you’re about to do?’ I told Lara, ‘I am very clear on what I need to do, and I am absolutely the right person to do this.’

What I am doing is sharing my story. This is what happened to me. I don’t have to exaggerate. I don’t have to make it flashy. I don’t have to tone it down. This is what my experience was, and everyone at the table needed to hear it.

I knew that I could do this with the strength of doing this for everyone who can’t. I am so glad I said, ‘Yes!’

At no time, did I think about saying, ‘No.’

I could have taken it and said, ‘I’m done. I’m done with cancer,’ and walked away. And that’s OK. That’s totally OK to do. I know people who have done that. They are too fatigued by fighting cancer and losing people they love. People have to do what keeps them healthy and sane.

But I knew I could do this. So I did. I came to the White House, and I took my seat at the table as a survivor advocating for all the people who couldn’t physically be there, as well as those who have passed away. And I will continue to advocate.

5. Get Started Advocating Today

There’s so much more work to be done. I wonder if I said enough, and can I do more? I know There’s some more I can do – more we can all do – but it had to start somewhere. And I’m glad it started.

I thought advocates had to be a certain type of person: a ‘goody two-shoes’ or ‘do-gooders.’ I thought advocates were people with a lot of money that made large donations to charity, or that I needed to have a lot of money to make an impact as an advocate. I thought I needed a Rolodex filled with names and phone numbers of people to call.

I never realized an advocate could be a regular lady like me. I’m not exactly poor, but I don’t have a lot of money. But I do have everything I need.

I know my rights. I know the laws. I know who my representatives are in my town and state. But I am a regular person, and I was scared. I wondered, ‘Who’s going to listen to me?’ I’m also a little goofy. I wondered if I could be serious. I thought there was a certain type of person that became an advocate because they were people who were listened to.

I was wrong! My story is what happened to me, and it was a problem – and it still is a problem – that needs to be addressed.

Unlike European countries, if we, Americans, get sick, and we cannot financially cover our bills, we will go broke. We don’t have a safety net in place. That is a real problem. It doesn’t matter who you are or where you come from. In this country, you deserve health care; you deserve to be treated with dignity and respect; and we have the resources. Our country has the capability, but it’s not being done.

We can do better. We must do better.

Recently Olivia Newton-John passed away from breast cancer. She was a 30-year survivor. How can someone living in the U.S. maintain survivorship, the cost of treatments, and the debt that comes with living with cancer for 30 years?

We deserve better.

I thought advocates were pious and high up on a hill. But an advocate is a regular person. I needed to be authentic and unafraid to share what happened to me. If you are those things, then you can be an advocate.

As an advocate and at the White House, my goal is to make sure that everyone has access to screenings, and that when they get screened, if there’s something wrong, they can get the care they need.

This is what I’ve learned: When we come together, and we help each other: We can do anything!

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Published August 16, 2022

Needles — it’s not exactly a patient’s favorite subject. In fact, some people suffer from “needle phobia” and won’t step foot into a doctor’s office or hospital because of them. Unfortunately, cancer treatments and surveillance often require a significant number of unpleasant pokes and prods. But while needles are often not a favorite subject among both patients and non-patients alike, research is showing there may be significant health benefits to facing the fear when it comes to acupuncture, a form of Traditional Chinese Medicine (TCM) that uses needles to stimulate the body.

What Is Acupuncture?

Acupuncture is an ancient practice originating in China. The main goal of acupuncture is to balance energy (also called “Qi”) within the body by adding more energy when needed, or by removing energy if there’s too much. According to TCM, just as veins allow blood to flow throughout the body, there are other pathways invisible to our eye, called meridians, that transport energy throughout the body. Along these pathways, there are approximately 350 specific locations on the body (acupuncture points) that can be used to access the body’s energy. By stimulating these points, one is able to adjust the amount of energy, thus bringing balance and equilibrium to the body.

What Is an Acupuncturist?

An acupuncturist is a specially-trained professional who delivers acupuncture treatments. They either have a master’s or doctoral degree to practice in the United States. In addition, they are required to take and pass a national exam, and complete a specific number of continuing education units to maintain their professional certification and/or license.

Today, acupuncture is considered a form of integrative medicine or complementary alternative medicine (CAM). It’s used around the world for a variety of reasons – including the management of pain, to help with fertility, to improve sleep, and more.

Have the Benefits of Acupuncture for Cancer Patients Been Researched?

Acupuncture has been recognized by the World Health Organization (WHO) and the National Institutes of Health (NIH) as effective in treating certain health conditions. As it relates to cancer, acupuncture has been shown to help patients manage side effects.

What Happens at an Acupuncture Appointment?

During an acupuncture appointment, an acupuncturist may ask a variety of questions regarding your health and energy levels. They may look at your tongue, feel your pulse, and ask about your bowel habits (hooray!). The acupuncturist is assessing various health attributes to make sure you get the best treatment for that day.

Your acupuncturist will use sterile, one-time use needles for your treatment. These needles don’t go too deeply into the skin, only about a quarter of an inch. Depending on the type of treatment you receive, your acupuncturist may leave the needles in for 30 minutes or more while you relax, or they might remove them quickly.

In addition to needles, acupuncturists are often trained to help patients through other methods that may include:

  • Moxibustion (or moxa)
  • Massage
  • Acupressure – good option for those who suffer from needle phobia!
  • Chinese herbal medicine

How Do I Find an Acupuncturist?

Talk to your care team to see if they can recommend an acupuncturist in your area who is comfortable working with cancer patients. Visit the American Academy of Medical Acupuncture to search for an acupuncturist with the National Certification Commission in Acupuncture and Oriental Medicine (NCCAOM). Most states require practitioners to be licensed by this board.

“I sought out acupuncture for help controlling pain and GI-related issues related to my treatment. I was weaning off pain medicine, and incorporating acupuncture into my treatment plan helped make the process easier. I took pain medicine earlier in the treatment process, and it was very hard to get off of it. I found acupuncture as an alternative way to deal with lingering pain from multiple surgeries. I also had some neuropathy issues as a result of my treatment and acupuncture helped with this as well. I always tried to avoid unneeded medication if there was an alternative, and acupuncture helped me eliminate various prescription drugs. The barriers I faced were mainly related to cost. I didn’t know if my insurance would cover it because it was in the Integrated Medicine department. After investigating, I found out it was not covered, but I found a clinic to do it that was not overly expensive. The positive effects of acupuncture outweighed the cost of it, so I budgeted for it when planning my spending for each month!” – Allison Rosen, stage II colorectal cancer

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